Topics: Family, Alzheimer's disease, Health care Pages: 19 (4903 words) Published: April 21, 2014
Concept 48 Caregiving

Sharon L. Lewis

Lyda C. Arévalo-Flechas

Denise Miner-Williams

There are only four kinds of people in the world—those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.

Rosalyn Carter

An estimated 65.7 million Americans provide unpaid care for an adult or child with functional and/or cognitive limitations. These dedicated caregivers provide between 80% and 90% of the long-term care provided at home. About 66% of caregivers are women and 34% are men.1 Many caregivers of older people are also older adults. Of those caring for someone older than age 65, the average age of the caregiver is 63 years; one third of those receiving care are in fair to poor health. One third of caregivers provide care for two or more people.1,2

The need for family caregivers will escalate dramatically in the coming years because of our aging population, increased longevity, and an overwhelmed formal health care system. People with chronic, debilitating diseases are being treated more effectively and they are living with rather than dying from these diseases. It is important for nurses to be aware of the role that caregivers have in health care delivery, the impact of this role on the lives of caregivers, and supportive interventions that can be provided to caregivers.


Caregivers are people who care for others who cannot care for themselves. A person becomes a caregiver when he or she provides direct care for children, older adults, or people who have acute or chronic illnesses or disabilities. Nurses and other health care professionals are paid caregivers who assist in the management of a person's illness or disability. However, the responsibility of day-to-day caregiving falls on the family. Family caregivers are sometimes called informal caregivers or unpaid caregivers because they provide care without pay, usually in a home or community setting. The focus of this concept analysis is on the family caregiver. For the purpose of this concept analysis, the definition of a caregiver is a lay individual (e.g., family member or significant other) who provides direct care to another individual with a health-related condition (e.g., elderly person or one who has a chronic illness).

Alzheimer's disease is the most common reason that someone becomes a family caregiver. The incidence of Alzheimer's disease is increasing steadily. There are now more than 5.4 million people in the United States with the disease. It is estimated that someone in America develops Alzheimer's disease every 69 seconds.3 In addition to the increasing number of people with Alzheimer's disease, care is required for people with this disease for an extended period of time. The range of time from diagnosis until death is often from 8 to 20 years, which is why Alzheimer's disease is often called the long, lingering death. The demands of caregiving over that long period of time can cause an incredible amount of stress for the caregiver.

Scope and Categories

The scope of the caregiving concept ranges on a continuum from a temporary/limited caregiving role for an individual with an acute illness or condition to a long-term or permanent caregiving role (Figure 48-1). Caregiving roles may be shared among family members so that the caregiving role may also be episodic.

Caregivers are often categorized by their relationship to the person receiving care (care recipient). Although some caregivers may not have a familial relationship, the most common types of caregivers are spousal caregivers, adult children caregivers, grandparent caregivers, and parent caregivers.

Spousal Caregivers

In the United States spousal caregivers are the most common family caregivers. Many of these caregivers are older themselves, and now find themselves in the role of caring for

FIGURE 48-1 Scope of Caregiving Role.

someone with physical and/or cognitive...

Links: Adapted from Lewis SL, Dirksen SR, Heitkemper MM, et al: Medical-surgical nursing: assessment and management of clinical problems, ed 8, St Louis, 2011, Mosby/Elsevier.
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